Considerations for disclosing Alzheimer's disease risk and biomarker results in a Pueblo community in Southwest United States

BACKGROUND: Biomarkers and Alzheimer's disease (AD) risk disclosure may help reduce disparities in dementia diagnosis and care in Indigenous communities. METHODS: Semi-structured interviews assessed beliefs about the causes of dementia, and interest in and perceived benefits and risks of obtaining AD risk information, including biomarkers. RESULTS: Thirty-two Indigenous and 26 non-Hispanic White individuals participated in the study. The Indigenous cohort endorsed divergent beliefs about the causes of dementia relative to the non-Hispanic White cohort. Eighty-one percent of the Indigenous cohort and 100% of the non-Hispanic White cohort endorsed interest in learning their AD risk primarily to improve health behaviors, gain health knowledge, and engage in treatments or clinical trials. Indigenous participants more frequently endorsed concerns about burdening family and limited access to health care. DISCUSSION: Incorporating discussions about causes of dementia, caregiver burden, and family involvement into return-of-results procedures may support informed, collective decision making.